A Story of Battling Insurance and Knowing a Child’s Rights
“In our house, ‘can’t’ isn’t a word. We can do hard things.”
When Jacqui McNeill adopted her then three-year-old daughter Emilia back in 2021, she knew she would be taking on the role of not only a parent but also a disability advocate. Emilia was born with a congenital limb difference which caused her to be missing all four limbs. Although Emilia enjoyed doing things that other children her age liked to do – coloring, playing with building blocks, showing off dance skills – certain activities proved to be more difficult, including self-feeding. For Emilia, the feeding process typically involved balancing a utensil on the edge of a table or eating snack foods from a mat on the floor.
“Mealtime was a fine balance of ensuring I allowed her the highest level of independence in feeding herself,” said Emilia’s mother, Jacqui. “However, this often led to meals which lasted more than three times a usual meal and many dropped utensils and food particles.”
Emilia became discouraged with mealtime and would eventually refuse to eat due to frustration and embarrassment. Determined to find a solution for her daughter, Jacqui began researching assistive technology and learned about Obi Robot. Obi is a robotic feeding device that allows individuals with limitations in their upper extremities to feed themselves. Through the use of customizable adaptive switches, Obi allows diners to select between four compartments of food and command when the food is captured and delivered to the mouth.
“Obi was the only available feeding device I found that appeared to be an accessible tool for a child without any residual limb strength.” said Jacqui.
The process of obtaining an Obi device for Emilia through insurance reimbursement was not an easy one, though. The initial insurance submission, two appeals, and a request for a state hearing were all denied. The next level of appeal, an administrative evaluation, was finally accepted. The denial was then overturned due to the insurance company’s failure to prove there were cheaper options on the market or to provide other valid choices for the family. The entire process from trialing Obi to insurance approval took about a year.
“Knowing I had to put in hours of evidence collection and testimony was extremely taxing, but I would turn around and do it again tomorrow,” said Jacqui. “I was not taking ‘no’ for an answer.”
Although trying to fund assistive technology through the appeal process can be challenging, there are resources available that can help. Parents or guardians can reach out to disability rights organizations or advocacy groups for assistance and seek legal help, if necessary. They can also connect with families who have successfully gone through the process to ask for advice and moral support. Below are a few resources that may help families through a funding battle:
- Local or National Disability Rights Organizations: There is typically an organization in each state that can help families understand their rights. A quick Google search can point families in the right direction.
- Legal Counsel: Disability rights lawyers are well-versed in insurance appeals and other funding battles. They can assist families with understanding their rights and taking a proper course of action, if necessary.
- Local or National Advocacy Groups: Seek out a local or national advocacy group for funding support. Almost all conditions and diseases have advocacy groups, foundations, or associations that may be able to assist families.
- Support Groups: The power of peers! Connect with support groups through advocacy or Facebook groups. Most advocacy groups have support group meetings where members can share their struggles and offer advice. Additionally, there are many active Facebook groups where families can post questions and receive support.
For many families, it can often feel like an endless battle with insurance companies to get their loved ones the support and resources they need. However, it’s important to understand their child’s rights, the resources available to them, and to keep fighting for them.
“If I have learned anything these past two years, it’s that the world tells [Emilia] she can’t,” said Jacqui. “But in our house, ‘can’t’ isn’t a word. We can do hard things.”
Nowadays, Emilia loves the independence she has to feed herself thanks to Obi Robot. Her favorite meals to eat with Obi are noodles of any kind and pizza cut into small pieces. She uses the adaptive feeding device at home, school, restaurants, and all over the United States! The family has taken Obi to a backyard barbeque in Tennessee and recently attended a Lucky Fin Project Weekend in Michigan.
“[Emilia] was able to show friends how her ‘Obi-bot’ works and how she can do it ‘all by myself, big girl” said Jacqui.
Emilia’s journey with Obi Robot is a testament to the power of advocacy and determination. Jacqui’s unwavering commitment to securing Obi for her daughter has transformed Emilia’s mealtimes. Their story is a reminder that independence for individuals with disabilities is possible with the right support and technology.
If you are interested in independent eating with assistive technology like Obi Robot, or have questions about funding, please contact our Customer Experience Team. Emilia’s experience is one of many successful insurance coverage stories for Obi!